tv Dateline NBC NBC August 24, 2015 2:03am-3:02am EDT
for crepe erase, brought to you by trusted guthy renker. >> reporter: charly has epilepsy. and the one thing that seemed to help was an oil made from something you might not expect -- marijuana. >> nothing had ever done this. nothing had ever touched her seizures. >> reporter: the oil is legal where charly lives. but not where these families live. >> i look to see if my daughter's lips are blue. i watch her when she sleeps. i look for the rise and fall of her chest. at 14. >> reporter: now, these parents are fighting to make this oil legal. and we're with them every step of the way. >> did anybody say, "well, that's crazy, 'cause it's never gonna happen." >> you say "marijuana", and they're like -- arrgh! >> reporter: just how much are they willing to gamble? >> if i have to choose between
losing my job, or losing my kid, what would any mother do? >> reporter: tonight, the promise -- >> this is what you give up when you start using cannabis. >> reporter: the risks. >> we don't know the potential side-effects. we don't want to make their seizures better and make their lives worse. >> reporter: and the families caught in the middle. >> it's awesome. i don't feel like a monster anymore. >> one kid, one day of no suffering is absolutely worth it. >> reporter: "growing hope." >> good evening, and welcome to "dateline," i'm lester holt. should medical marijuana be legal? does it work? for which diseases? for doctors, it's about the science. for lawmakers, it's about politics. but for the families you'll meet, it's so much simpler. it's about their children. here's harry smith.
>> reporter: three mothers and their children. on this winter day in virginia, they have a big hill to climb. each child is desperately ill. each has a form of epilepsy. >> no one else that i knew had a kid with seizures this bad, and no one knew how to treat it. >> reporter: illnesses so insidious they have stymied an army of doctors and specialists. >> a year of huge emotional stress on our family. >> reporter: but these women believe there is something that might help. something illegal in virginia, an oil extracted from marijuana. >> what is your hope for medical marijuana? >> to meet our daughter. to meet who she really is. >> reporter: to make that happen, these families are attempting to do something they've been told is impossible. they must change a law that has stood for decades. >> reporter: tonight, we'll follow them on a remarkable journey not only through the halls of government, but to the rocky mountains, where people
with all sorts of illnesses are seeking help. for these people, marijuana isn't about getting high, it's about getting well. >> give kisses. okay, that's enough." >> reporter: lisa and bobby smith were elated when their daughter haley arrived on august 20th, 2000. she was the perfect little baby or so they thought. >> are you playing the piano, haily? can you play some more? >> her first seizure was when she was five months old. >> five months? >> yeah. >> right, up until that point? >> normal, happy, developmentally right on track. >> a-b-c. >> but she was also my first child, so i could have had blinders on and didn't see some of the signs that were there. >> reporter: haley's seizures became more frequent. more violent. >> she wasn't diagnosed till she was 7, so that was a true roller coaster. >> yay, 7 years old. >> it was awful the first seven
years because we -- we didn't know what was wrong with her. >> reporter: over the years, haley's mystery only deepened she was eventually diagnosed with dravet syndrome, a rare form of epilepsy that can be fatal. >> do you live your life on a kind of razor's edge? >> anywhere you went with her you would just hold her and think, "okay, she has a seizure right here, what am i going to do?" >> reporter: treating dravet syndrome is a challenge. quite often, epilepsy drugs don't work. sometimes they do more harm than good. she was actually in the emergency room every week. and that's not exaggerating. every week from january to april in 2005. >> reporter: by 2012, haley was a teenager and the seizures had only gotten worse. >> haley was having about 300 seizures a year. and to us, that was okay. you know, 300 seizures a year was -- it was okay. >> yeah, we can handle that. >> you know nobody can comprehend that. >> i know. >> right? people that are watching this.
you said it was a pretty good year 'cause she only had 300 that year. >> yeah. >> reporter: all those seizures took a toll on lisa, now also raising and home schooling twin boys and bobby trying to make a living as a contractor, and support his family. >> what else starts with h? >> hat. >> reporter: about three years ago, desperate for anything that might be able to help her daughter, lisa stumbled upon a most unconventional treatment. she found a mom in colorado who said that marijuana worked wonders. >> we were on dozens of drugs and each one worst than the next. >> reporter: paige figi is that mother. she lived in colorado springs. and her daughter charlotte was diagnosed with dravet as a toddler. >> she was on seven daily seizure drugs at two years old and had failed every drug at two years old as well. >> reporter: charlotte was so sick, she was in hospice care. paige's husband, matt, was a
green beret. deployed to afghanistan for much of this time. >> reporter: paige felt very alone. >> i hit rock bottom with her. the hospital said there's nothing left. we don't have anything left to do. we're sorry, you should just go home and deal with this at home. >> so when they tell you, just go home and deal with this at home, are they basically saying, go home and watch your child die? >> i literally i brought her home and i put her on a "do not resuscitate." my husband had to sign it from afghanistan. and i was just going to say goodbye. and every night it's -- actually, and i'll say this. i was praying for her to die, because it was so bad to watch the suffering that she's going through. you just wish, and she didn't. so it's hard for me to admit that, but she didn't. it's very difficult to see a kid suffering that greatly, that you actually do, you just wish for it to stop. and in her case the only way for it to stop was for her to just pass away in her sleep.
>> reporter: but, paige didn't give up. she kept looking. she and matt both discovered online reports of epileptic children whose seizures abated or even disappeared when they were given marijuana. they wondered if it could work for charlotte. >> we were in a legal state. i got her a red card. i got two doctors. >> for medical marijuana? >> for medical marijuana. i just started looking into it. her epileptologist gave me the go ahead. >> reporter: paige was particularly interested in an overseas study that suggested oils made from a cannabis plant high in a compound called canabadiol. a non-pyschoactive element in marijuana, seemed to be effective in reducing seizures. a friend put paige in touch with a grower. together they made the oil for charlotte. >> she's catatonic in a wheelchair on oxygen on a feeding tube and i put it in her feeding tube. in a measured amount, very low
dose to start. and just waited to see if it would work. and she stopped seizing. so she didn't have a seizure for seven days. she didn't have 300 seizures that week. nothing had done ever this. >> time out. she's having 300 seizures a week. you think she's going to die, right? and you introduce this for the very first time. and it just stops. >> yep, her seizures stopped. and she didn't have a side effect. >> reporter: that was then. >> where you going? up the trail? >> reporter: this is now. that squeal of joy is from the now 8-year-old charlotte, who kharly, as her family calls her, speeding through the pine trees of colorado on the zip line her mother matt built. >> pretty good zipliner. >> reporter: reading paige and charlotte's story online gave lisa smith back in virginia new hope, but also cause for concern. the use of marijuana, even as a medicine made her family uncomfortable, yet the benefits
seemed to outweigh the stigma. pot though, wasn't and still isn't legal in virginia. so the big question for the smiths was, should they uproot their family and move to colorado? >> moving was not an option? >> i would say it was always an option, but it was way off. >> so what did you do? >> fighting. we chose to fight. >> reporter: fighting meant lisa smith would have to get the virginia general assembly to completely change the way they thought about marijuana and convince them to change a state law and she knew she couldn't do it alone. >> so at the age of 14, she has nothing left. if she was your child, what would you do? >> reporter: coming up -- call them a band of mothers, fighting fear of the unknown, can they change minds and the law? >> can anybody say, well, that's crazy, because it's never going to happen?
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it's what you do. this golf course is electric... ♪ >> lisa and bobby smith have cared for their daughter haley, who suffers from a confounding form of epilepsy. over time, they met other families struggling to cope with these extreme forms of epilepsy. in 2014, some of these families finally met in person at a seminar to learn how to lobby their state government. together, they decided to do
something audacious. convince the state legislature to make legal room for a very specific medical marijuana. >> if it was just a matter of getting the oil for the children, healthwise, everybody's on board for that. >> we're from fairfax, virginia. >> reporter: this was the core group: beth and patrick collins, and their daughter jennifer, who suffers from jeavons syndrome, another extreme form of epilepsy. >> and jennifer has a statement. she's a litte nervous so i'm going to read it for her. >> we came down to the capital today to lobby for medical marijuana. >> reporter: rounding out the group is teresa elder her daughter ashley and her son tommy, now 22, he wasn't supposed to make it to his third birthday. >> reporter: the hope for all of these families was that an oil, extracted from a marijuana plant, might help where all other medications had failed. >> so you as a group get together and say, we've got to get the law changed in virginia.
>> right. >> did anybody say, well, that's crazy because it's never going to happen? >> oh, yeah, all the outsiders did, no way. it will never happen. >> and why? >> because it's the "m" word. you can be in there talkin' to someone, legislator, delegate, senator -- and they say, "oh, hi, you know, what's your name." "blah, blah," and then you're talking, and then you say marijuana, and they're like, you can see the reaction change. >> reporter: changing the law in virginia is critical for teresa and her son tommy because -- >> as soon as tommy doesn't become a resident of virginia he loses all the services i fought for twenty-two years to get. services tommy can't live without. >> like, he has home nursing. now that he's an adult, he qualifies for medicaid. when your bills are between 500 and $600,000 a year, that's a lot. >> so the virginia families' fight begins. on this day, they crowd into
this hearing room. nervous, but determined to begin the long process of changing the minds and hearts of these lawmakers. the families are not asking for legalize marijuana in the state but they are asking for permission to use cannibis-based oils that have shown promise in treating epilepsy. >> reporter: republican speaker of the house, james howell, listened to the parents in a meeting but was far from optimistic. >> please don't hold out any great hopes, it's a tough thing but i dont want to set up any false aspirations. >> reporter: a new law would have to pass both chambers of the virginia legislature. this is the first step, a committee hearing. >> mr. chairman. >> reporter: the proceedings begin with state senator dave marsden explaining the bill he's introducing. >> virginians should not have to become medical refugees from their homes and live in other states. >> if you could introduce yourself -- >> reporter: then, it's the families' turn. >> my name is beth collins and this is our youngest daughter, jennifer, she was going to testify but she's not feeling well today. we had exhausted all other treatments. the side effects of her
medication included rages, cognitive functioning issues -- excuse me. this was not the happy go lucky child i once knew. >> reporter: before beth collins can finish testifying, it happens. right there in the hearing room, haley has a seizure. lisa struggles to stabilize her daughter and tries to regain her composure. she still wants to speak to the lawmakers. >> this is leeza -- lisa smith. >> reporter: she collects her thoughts and she steps to the microphone. >> this is normal for me this is daily for me. it's been stated we don't know the longer term effects of medical marijuana but i can tell you i know the long term effect of uncontrolled seizures. it'll be cognitive decline and premature death. i look to see if my daughter's lips are blue. i watch her when she sleeps, i look for the rise and fall of her chest.
at 14. that's not what we do. so i ask you, i beseech you, please let this come out of committee. >> reporter: finally it's teresa elder's turn to speak. she doesn't say much, but what she says comes straight from the heart. >> reporter: so let me leave you with this, if i come back here next january it's very probable i'll come by myself and you'll recognize me and if i have an empty stroller, this very testimony will come flooding back to you. please help us help our children. >> reporter: just seven days later, tommy would be rushed to the icu and put on life support. for teresa and the other families, the stakes couldn't be higher. coming up, help from a higher power? >> i started to realize there's absolutely nothing that's un-christian about helping people with a plant. >> reporter: meet the remarkable stanley brothers. when "dateline" continues.
says it's never easy for her brother. >> i'm gonna get it. >> sometimes he'll come up to you and just give you this look like, "hey, i'm about to have a seizure," and like grab onto you, and then sometimes he'll kinda yell out as he's going into it, and you just hear this big, you know, grunt, or a yell while he's going into his convulsions. and it's pretty scary. >> reporter: this seizure lasted almost an hour. it was so severe that tommy was rushed to the icu. he went into respirtory failure. his lung collapsed and the seizures continued. his mother captured one on camera. >> reporter: teresa sat by tommy's bedside day and night as doctors worked to stabilize him. this was the 39th time in his life that tommy needed life support. teresa and the other virginia families were now more focused than ever. but as the legislation they
believed would help their children, made its way through the virginia general assembly, lawmakers continued to ask whether there was proof the oils even worked. >> the old hypocratic oath first said, no-no harm. we seem to have abandoned that and replaced it with, first do something. >> reporter: to try to find the answer, we went to colorado. medicinal and recreational pot are legal here and because of that the state has become something of a new lourdes. with people flocking here for cannabis-based cures. >> the main characters of this beautifully written novel are the stanleys. i would like them to step forward. >> reporter: and in the middle of it all are the stanley brothers. all six of them. >> reporter: the brothers' story begins small and in a personal way, they'd begun to legally grow medicinal marijuana and gave some to a cousin dying from cancer. >> it really prolonged his life and gave him a better quality of life. i mean the doctors pretty much
told him, go home. >> get ready to die? >> yeah. >> reporter: but it was another patient who transformed the brothers' mission. for, it was joel stanley who brought paige figi the marijuana that was just right for her epileptic daughter, charlotte. >> we had what she was looking for. a non-psychoactive type of plant and i went to her house and i started talking to her and charlotte had two seizures right there within the first hour of us sitting down talking. so this became very real but it became a very difficult question. will you make something for my child who's already very sick? >> reporter: charlotte figgi was the first person to get the oil the brothers made, paige says it stopped her daughter's seizures. >> yeah. >> reporter: now, having hired botanists and scientists and built a lab, on a large scale, they are making the very oils
the virginia families want to give their children. they even named the cannibis oil after their first user. it's called charlotte's web. >> charlie, ya ready? >> reporter: the oil was so effective, the figis eventually took charlotte off of all her meds and to this day charlottes web is all she takes. >> and we do that in the morning and the night and that's all kharly needs. >> you have to indulge me on this. did anybody think, "this is a miracle?" >> i still think it is and then another one happens every day. >> so you're from this big family. evangelical christians, right? was there a part of whatever moral tuning fork is inside you to say, this is a non-starter? >> don't a lot of evangelical families produce rebels and -- [ laughter ] >> you know, i was all about it.
>> once i started to look into it, i started to realize there's absolutely nothing that's un-christian about helping people with a plant. >> reporter: the brothers say the oil is now helping hundreds of other children with epilepsy and the cost? $250 a bottle. it lasts two months. >> i wanna plant this flower. >> reporter: a number of the families who come to colorado seeking help, wind up at the realm of caring. a support group the stanleys helped establish. >> reporter: heather jackson runs realm of caring. zaki is her son. she says he's been seizure free for the two years he's been on charlotte's web. >> people hear these stories, they see these children, they still find it hard to believe. >> i know. i mean, i would find it hard to believe if i wasn't living it. hopefully, what we'll be able to do with the realm of caring foundation is to establish the research and collect in a way that the science community can say that it's valid because you're right.
right now his story is just anecdotal evidence. it's just a good story. it's a darn good story though. >> reporter: and yet, as encouraging as the anecdotal evidence may be, there's been no clinical research on the safety or efficacy of charlotte's web. because marijuana is known as a schedule-one drug, it's considered by the federal government as dangerous as heroin. serious research in this country on marijuana treatments has been sparse. >> no one from the government, you know, has said, okay, buddy, you with this stuff, you're giving this to kids with epilepsy, are you nuts? you know, has the fda called you and said, where's the proof? >> we can't go making claims that are not approved by the fda and we don't. the resounding theme we get back from the regulatory agencies and the medical community s let's research this. that was not being said a few years ago. now it is being said. >> reporter: miracle or not, it's precisely this oil,
charlotte's web, that teresa elder back in virginia was praying her state legislature would allow her to possess. and even as her son tommy clung to life in an icu, there came a most unexpected visitor. senator dave marsden. >> he came to see tommy in the icu, which i believe helped him realize, wow, she's right. we don't have time. >> reporter: the senator decided to add an emergency clause to the legislation he was backing. a clause that would make the bill take effect immediately. if passed, the families' wait would be over. >> reporter: coming up, a rare look inside the lab where charlotte's web is made. >> when you look at this plant, what do you see? >> i see beauty. i see wonderment. i see incredible opportunity. >> reporter: can one drug really replace all these?
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>> reporter: charlotte's web, the mystery oil made from cannabis. it's what many of the virginia families are fighting to have access to, believing it may help treat the epilepsy that plagues their children. >> welcome to cw botanicals. >> reporter: we were invited for a rare look inside the lab where the oil is actually made. >> this is our rotary evaporator. >> reporter: this is a side of the cannabis business few people ever see. no tie dye. no black lights. no bob marley posters. just plants and science. bear reel is the lead botanist in the stanley brothers' lab. >> this is charlotte's web. >> right. >> what do you do with this here? >> right now, what we do is we make our whole plant extract
with this plant. we cultivate it outdoor in the field. we grow it up till it flowers. we harvest it dry and bring it back to the lab to do an extraction on it. that turns into our charlotte's web hemp oil. >> would you call that a marijuana plant or a hemp plant? >> it's a hemp plant. >> reporter: the distinction that the stanley brothers and everyone that works for them makes between hemp and marijuana is important to understand. a botanist would tell you the plants are the same but, according to the federal farm bill of 2014, a plant with less than .3% of thc, the ingredient that gets you high, is hemp. >> so, this is all hemp. it has lower than 0.3 percent thc. >> lower than 0.3 percent? >> that's right. but it has a naturally very high amount of cbd. >> reporter: cbd is the chemical compound that some believe, helps people with epilepsy. >> when you look at this plant, what do you see? >> i see beauty. i see wonderment. i see incredible opportunity.
>> do you think the rest of the scientific community in america is seeing the same thing? >> i think a lot of people are waiting to see how it pans out. >> reporter: one of the people very interested in how it pans out is dr. amy brooks kayal, a neurologist in denver and the president of the american epilepsy society. she says currently there's just not enough science to prove the oils work or how they effect -- affect patients. >> there's no question that based on the science, there is potential there for a component of marijuana and possibly cannabis oil to be an effective treatment. but we don't know that yet, and most importantly we don't know the potential side effects. we don't want to make their seizures better and make their lives worse. >> reporter: dr.brooks-kayal suggests its possible some of the improvement parents are seeing may be a kind of placebo effect. >> the expectations of the family and the amount of the investment that the family made to get this therapy might have weighed into their perception of
whether or not their child responded. >> reporter: she says more clinical studies need to be done. >> in medicine, believing that we know the truth without doing the study is a very unsafe thing to do. the reports from a single family or a single child doesn't mean that anybody else is gonna respond that way. >> reporter: dr. alan bowling is a yale trained neurologist in denver, who also wants to see more research. he says marijuana has the potential to impact a wide array of diseases, including his specialty -- multiple sclerosis. >> do you see potential for marijuana as a treatment for ms? >> what i think holds lots of potential for the future is that there very clearly are marijuana-related biochemical systems in the nervous system and other parts of the body. >> reporter: in effect, he says the human body may be wired to utilize marijuana. dr. bowling treats bob, who asked us not to reveal his last name.
bob was a trial attorney for 25 years until -- >> on my 50th birthday, i was told that i had ms. >> reporter: ms affects every patient differently but dr. bowling told bob there is research overseas that suggests marijuana can help with two of the most severe symptoms, muscle spasms and pain. bob buys marijuana at a legal dispensary and ingests it with a vaporizer. >> i use a strain called harlequin, which allegedly, is five cbds to two thcs. i could take, like, two or three hits, and it would really take the edge off the pain without getting me high. ♪ >> reporter: we traveled down i-25 from denver into the mountains of divide, colorado. there we met army veteran matt kahl. >> it's weighed heavily on my mind for a very long time. >> reporter: kahl has ptsd, after two tours of duty in
afghanistan left him with a shattered skull and a lit any of other conditions. >> i didn't believe that i had the right to live anymore. so ten months after i got back, right before christmas, i attempted suicide for the first time. >> reporter: in his darkest hour he tried smoking marijuana. he said it made him feel better and he became convinced, it helped his condition. matt and his wife aimee say they had no choice but to move from north carolina. >> i knew i had to move somewhere legal. so i became a refugee from my home. >> a marijuana refugee? >> i live here in colorado now because here we actually have freedom. >> this is my exit paperwork from the military. >> reporter: according to matt, the va's treatment plan was to give him a menu full of prescription drugs that he says turned him into a zombie. >> this is what you give up when
you start using cannabis. >> these are all meds that were prescribed to you, for you, from all the different ailments that you suffered from? >> yes. >> reporter: matts says using marijuana helps him more than all the pharmaceuticals he was on, but without more research, there's no way to know for sure. for matt, there's no question. >> has marijuana saved your life? >> yes, i wouldn't be alive today without cannabis. i'd be dead, i guarantee it. >> did you get your husband back? >> i got my husband back. i got my husband back. yeah, and my best friend. >> reporter: back in virginia, there's good news for the families. after six grueling days in the icu, tommy elder made it home. and in the two months that passed since we last saw them, the legislation they've been fighting for has worked its way through the virginia general assembly and now it will all
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♪ ♪ >> reporter: the virginia families enter the historic state capital on edge. it's now february and they have come a long way. after today, the law will either pass or the vote will be put off for at least a year. lisa smith is here with haley. teresa elder is here, too though tommy couldn't make it. and patrick and beth collins are here too, with 15-year-old jennifer and 17-year-old alexandria. of the virginia families, the collins are the only one who have experienced the benefits of cannabis oil first hand. a year ago, after hearing about charlotte's web oil, their family made a decision to beth and jennifer would move to colorado for the oil, while the rest of the family stayed behind in virginia. >> i felt we really had no other option but to try it. we didn't really plan it all too long because it was too painful
to plan out too long. this is our home and jennifer grew up here, you know. and my family's here and my other daughter goes to school here. >> reporter: the driving force in the collins' decision to split their family up were the side effects of the medicines jennifer was on, side effects which they say were getting more and more horrific. >> did you feel like you were losing your daughter? >> absolutely, we were losing our whole family. >> just watching her cognitively decline and watching these rages that, you know, were devastating for her mentally. >> we had times when we had to call 911 to come and have police come and help me because he'd be out of town or something and you know, i was afraid of my daughter. >> a little girl? >> a little girl. >> reporter: in colorado, beth got the charlotte's web oil from
the stanley brothers and gave it to jennifer, but it didn't work. so the brothers gave beth something else, "thc-a." beth says that one did. >> what is it like for you to be free of some of those side effects? >> it's awesome. i -- i don't feel like a monster anymore. >> a monster? >> because when i had the rages, i felt like monster afterwards, because i would just physically attack my parents. and i didn't have any control over it. >> what would you tell people who think, we just think this is -- this whole idea of medical marijuana, or that cannabis has any medicinal value, they just think that it's a bunch of baloney. >> i'd tell them that i've seen it work. it worked with me. i've seen it work in a bunch of other kids.
and that it's an amazing plant. >> you get on the plane, fly out to colorado, see with your own eyes what's happening. what did you think? >> this is amazing. she's back. my daughter's back. her personality, you know. >> life changing. >> reporter: but splitting the family and being apart was too much. beth and jennifer moved back to virginia, and that's why on this february morning they are gathered here, with teresa elder and the smiths in the house gallery to await the final vote. >> the house is now in session. >> what this bill says is one simple thing. if you or your child has intractable epilepsy, and you are caught with this oil, the commonwealth of virginia is not going to make a criminal out of
you. >> reporter: the families sit. anxious and waiting. >> the bills listed from page one to thirty seven. >> reporter: there are others bills up for vote first. >> house bill 1950. >> reporter: huddled high above the politicians deciding their fate and the well being of their children. finally, the bill number pops up on the vote board. the vote is called. the mothers draw in tighter and cling to the hope that all this hard work won't be in vain.
♪ ♪ >> we cannot change the prescription -- >> reporter: you could feel the tension at the public gallery in richmond, virginia. but then as if the numbers on a lottery ticket appeared in a row. >> ayes, 98. nos, zero. >> they won. they'd been told by a capitol insider that emotion doesn't play in this building. really? the final vote is 98 delegates for and two abstentions and not
a single "no" vote. these parents had done it. their children had done it with them. ♪ >> reporter: two weeks after the vote, virginia governor terry mcauliffe walks into the office once occupied by thomas jefferson and, amid the flashes of the local press corps, signs the legislation into law. >> okay, folks, it is now law. [ applause ] >> i can't tell you, first of all, how much i appreciate the great work of delegate dave albo and senator marsden. i also want to thank the courageous mothers and fathers who have been down here lobbying to get this legislation passed. >> reporter: all of the virginia families are here for this historic moment and haley even with a life threatening disease, charms one last politician. >> every parent feels the same way, you were going to leave the common wealth of virginia, now you can stay. and you saw the tears flowing down the cheeks of everybody in
that room, they want to stay here. >> reporter: it is an important victory for these families but it does not make marijuana legal in virginia. it allows them to possess, with a doctors certification, the oils from colorado. a wig -- big questions now looms. because pot remains illegal at the federal level, is it legal for the families to go get the oil in colorado and bring it back to virginia? >> technically you still can't. >> bring it in. >> mail it, drive it, fly it. >> right. >> technically. >> technically. >> technically. >> right? >> yeah, but we're not technical people. [ laughter ] >> yes, i'm here to pick up the oil. >> so where are you from? from virginia. >> reporter: one week later bobby smith did travel to colorado to pick up the oil from the stanley brothers. >> most of them stop right there. >> reporter: because of the work the mothers did bobby will not face prosecution for having the oil in virginia. but he is defying federal laws by taking it out of colorado. >> the moms ran the marathon, and i got to finish it.
>> thank you. >> so nice to meet you. >> nice to meet you too. >> wow -- yes!!! >> as far as we've travelled, and as much as the moms have done, our hopes and prayers this medication works. ♪ >> reporter: as the sun rises in virginia it's a new day. after bobby's trip to colorado, haley starts treatments with charlotte's web. there is no guarantee it will work, but the smiths believe it's worth a try. >> it is there -- there it is. tastes like brussels sprouts? >> reporter: lisa and bobby are hopeful as they wait to see if it works. jennifer collins is using the "thc-a" she first tried in colorado. and beth and patrick are lowering the doses of her anti-epileptic pharmaceuticals. >> so now that you know that
thc-a works for your daughter, are you prepared to break or circumvent federal law in order to make sure she continues to get it? >> well, we wouldn't have worked this hard for this bill if we weren't. >> reporter: for teresa elder and her son tommy, the situation is a bit more complicated. teresa works for the federal government. >> by law, you can't possess it because you're a federal employee. >> right. >> right? but do you have an overriding moral responsibility to your child? if a doctor says it might be able to help, if all your research says it might be able to help, do you help your kid, or do you defy your government? >> that's the huge dilemma. because i can't defy my government, because i can't lose my job. but if i have to choose between
losing my job or losing my kid, what would any mother do? >> reporter: as far as the parents in virginia travelled and as far as that first mother, paige figi travelled all these parents say, there is farther to go. >> federal government needs to finally step in and get involved. >> reporter: paige figi is lobbying on capitol hill, for a law named after her daughter that would make chralotte's web legal nationally. and all the virginia families are fighting for federal changes as well that would make medical marijuana easier to access and research. >> we have to face that argument that this is not fda approved because it can't be because it's a schedule one. >> reporter: taking their case to lawmakers like new york senator kirsten gillibrand. >> congress shouldn't stand in the way of children who need medicine. >> reporter: dr. amy brooks-kayal says we don't yet know enough about cannibis-based
treatments, acknowledges that marijuana's status as a schedule-one controlled substance creates a catch 22. >> is the fact that marijuana is a schedule-one drug, is it preventing wide-scale research that could be on-going right now? >> the fact that marijuana is a schedule-one drug is a significant barrier to research. is it completely preventing it? no. is it slowing it down? absolutely. in my opinion, should marijuana be schedule-one? absolutely not. there are known medical uses for marijuana. >> reporter: paige figi says because of those known medical uses, she'll keep fighting until federal law is changed. >> i am just willing to go fight for this for other kids because i don't want any one more kid to have to go through -- if i have to fight all these years for this, to help one kid not suffer for one day or one hour, it is worth it. i mean, one kid one day of no suffering is absolutely worth it. >> reporter: lisa and bobby say after a couple of months haley is suffering less. to date, her seizures have been reduced by 40%. >> nice job, haley!
>> if charlotte's web works for haley, they will no longer have to fly to colorado. because of virginia's new law, the stanley brothers have decided to ship it there, and other states with similar laws. in spite of the fact that several federal agencies maintain that oils like charlotte's web are illegal. for these families it's been an incredible journey. that was once even considered impossible but through it all their inspiration has remained the same. >> there's nothing i wouldn't do my for daughter, either of my daughters. >> we're just like any other parent trying to do what's best for their kid. >> when you have access to it now, if you didn't get the oil now and you waited and she passed during a seizure, you'd always say, why didn't we go? why didn't we risk it? you know, breaking a federal law would be okay if i still had my daughter. so, we choose her life. >> that's all for now.
i'm lester holt. thanks for joining us. this sunday, two huge stories upend iing the campaign. for the republicans, accepting the fact that donald trump is here to stay. >> let's assume that somebody else becomes president, wouldn't that be horrifying? and how do the opponents now deal with the juggernaut. for the democrats, it is the hillary's e-mails. >> nobody talks to me about it other than you guys. >> it adds fuel to the biden fire, and did the vice president just tease the 2016 dream ticket by meeting we liz beth warren, and plus trump on hillary. >> and in her rein, look at what happened. everything fell apart. >> and sitting down with car lly